Recovering from CAR T-cell therapy

How long will it take to recover after CAR-T therapy?

Your recovery from CAR T-cell therapy is unique. In general, it can take a few months to recover fully, but you will have follow-up appointments beyond this to check how you are doing.

If you’re still recovering after a few months, that’s OK. Some aspects of recovery, like fatigue, can take longer to recover from. Speak to your medical team if you are worried about any part of your recovery.

Everyone’s recovery is personal but always have hope and belief that you will eventually feel like you again.
Rachel, who had CAR T-cell therapy to treat triple-hit diffuse large B cell lymphoma

How long will I be in hospital for?

You will be monitored in hospital for about 10-14 days while you recover after your infusion.

You can be discharged if:

you have recovered from any side effects
are no further than a 1-2 hour drive from the hospital (in case you experience any side effects)
you have someone to care for you at home.

If you do not meet the above criteria, you will stay in hospital for 28 days after your infusion.

Are there any side effects of CAR-T therapy?

After treatment, your medical team will monitor you closely because most side effects develop within the first few days – but some could occur up to eight weeks later.

Side effects will vary from person to person but may include the following:

Cytokine release syndrome (CRS)

When CAR T-cells enter your body, they can activate other cells in your immune system. Sometimes this signalling can cause an inflammatory response across the whole body, known as cytokine release syndrome (CRS).

Symptoms of CRS include:

flu-like symptoms
high fevers
low blood pressure.

It can be tricky to determine whether you have an infection or CRS so you will likely be given antibiotics straight away.

In very extreme cases, it can be life-threatening and you may need to be looked after on an intensive care unit.

Neurological problems

When lots of CAR T-cells are activated, they can affect your nervous system. This is called immune effector-cell associated neurotoxicity syndrome (ICANS), or simply neurotoxicity.

Symptoms can vary from mild to severe. You might experience:

tremors
confusion
difficulty speaking
difficulty writing
difficulty moving
headaches
dizziness.

The nurses looking after you are trained to carry out neurological screening assessments. They will ask you various questions every day and will also assess your handwriting.

This might feel worrying but remember: your nurses and doctors are trained to manage these side effects and can treat ICANS with medications, such as steroids, if needed. Speak to your medical team if you have any questions or worries about neurotoxicity.

Neurotoxicity generally occurs within the first 28 days after infusion. There is a small risk of this happening beyond 28 days – up to eight weeks – so you are not allowed to drive for eight weeks after infusion.

Tumour lysis syndrome

CAR-T therapy destroys lots of cancer cells quickly. This can release chemicals called uric acid, potassium and phosphate into your bloodstream. High levels of these chemicals can affect your kidneys. This is called tumour lysis syndrome and can be treated with fluids and medicine. Your medical team will test you regularly for this side effect.

Allergic reaction

You might have an allergic reaction to your CAR T-cells. Your nurse will give you medication before your infusion to prevent this but tell them straight away if you feel unwell.

Low B cell count

Current CAR T-cell therapies target cancerous B cells, but they may destroy healthy B cells as well. These cells are part of your immune system and help fight infections, which means after treatment you may be at risk of picking up an infection. It’s important you inform your medical team if you think you have an infection because you may need treatment for this.

Your medical team may decide to give you IVIGs (intravenous immunoglobulins) after your CAR T-cell therapy if they think you’re at risk.

Infections

You will be at a higher risk of infections after CAR-T therapy as your immune system might take a while to recover.

Some symptoms of infection include:

a temperature of 38°C or above
uncontrolled shivering
a cough or chest pain
shortness of breath or fatigue
redness, pain or discharge around a Hickman, Central or PICC line or Port
being sick or stomach pain
pain when having a wee or your wee being smelly
diarrhoea (runny poo) or blood in your poo
generally feeling unwell.

If you keep getting infections (recurrent infection) then you may need a treatment called immunoglobulin infusions.

You will also be given anti-viral, anti-fungal, and anti-bacterial medications as part of your recovery to help prevent infections. You might have to take these medications for a few months until your immune system fully recovers. Read more about infections on our Dealing with infections webpage.

Important:

If you have been discharged from hospital and have any of these symptoms, or think you have an infection otherwise, call your medical team straight away. They will give you phone numbers before you are sent home, so remember to keep or save them somewhere safe.

Try to stay positive. I had many side effects and a difficult recovery but things will improve and I've now been in remission for 2.5 years.
Robert, who had CAR T-cell therapy to treat follicular lymphoma

Will I have more hospital appointments?

You will likely have an appointment with your CAR-T medical team 30 days after your infusion to check how your recovery is going. You might have a PET scan or bone marrow aspiration (BMA) to check your disease.

You will then be seen in the CAR-T clinic:

three months after infusion where your team will check how you have responded to CAR-T therapy. Before this appointment you will have a:
- PET scan if you have lymphoma
- BMA if you have acute lymphoblastic leukaemia (ALL)
six months after infusion
one year after infusion
then once a year, every year.

The appointments you have after your CAR T-cell therapy may be a bit different to the list above. It will depend on your hospital, their guidelines, and your specific situation.

Remember:

If you start to feel unwell or are worried about your recovery in any way, call your medical team. It’s much better to check even if you are fine, so don’t take the risk. Your medical team will want to hear from you so don’t worry about bothering them.

I am now still in complete remission over 12 months later. I still get regular check-ups with my consultants to monitor my progress which is reassuring. CAR-T has given me another lease of life.
Gary, who had CAR T-cell therapy to treat non-Hodgkin lymphoma

How can I help my recovery?

Some things are outside your control during your CAR-T recovery, but it can help to have some focus and keep yourself motivated.

Here are some things you can do to help your recovery:

Eating and drinking well

Building your fitness

Coping with fatigue

Looking after your mental health

Spending time with friends and family

Getting your vaccinations

Protecting your skin

Going on holiday

Having sex

You have to give yourself time, you cannot rush it. Six months after my treatment and I am generally feeling back to normal but I still have days when I'm physically and/or emotionally exhausted. But they're few and far between and I recognise the symptoms and so take a day or two off. That usually puts me back on track.
Mary, who had CAR T-cell therapy to treat diffuse large B cell lymphoma (DLBCL)

When can I go back to work or school?

You will be able to return to work, school, college or university when you have recovered well. This will depend on your individual recovery and your circumstances, i.e. what kind of job you have. You might be able to return quicker if you:

can work or study from home
can work part-time
have an office job, or a job where you are sitting or don’t have to interact in-person with others.

In general, you’ll be able to return six months after your CAR T-cell therapy. Chat with your medical team as they will be able to best advise you. They will be able to help you talk to your employer, too, if needed.

Read our information on Returning to work and Returning to education for more support.

Some days you feel almost fully recovered and it is tempting to do too much. You can pay for that in the following days. The recovery from CAR-T is a slow process, with ups and downs. Your family and friends need to understand that. That way they can stop you from overdoing it no matter how energetic you might be feeling.
Mark, who had CAR T-cell therapy to treat high grade non-Hodgkin lymphoma

Where can I find further information and support?

You can read more about CAR T-cell therapy, including from patients themselves, on the following websites:

This information was developed in partnership with Blood Cancer UK.

It also has additional resources for anyone who is having CAR T-cell therapy, your family and your carers:

Practical and financial support

If your child is having CAR T-cell therapy

Resources for carers

Information published: 30/08/2024
Next review due: 30/08/2025